Anti inflammatories

[cathie]

I'm on rituximab and it has helped but not enough. I'd like something like methotrexate to give it a boost, but I'm back on the rheumy-gastroenterologist roller coaster because of worries about liver damage. Yesterday my GP showed me recent blood results which show I'm anemic and said I should stop my (very modest) use of ibuprofen n case t damages my lver. anyone wth experence of antnflammatores whch dont damage stomach? dont seem to e ale to wrte n ths any more hope ths makes sense.

[Jora]

Hi Cathy.

I can't tolerate NSAIDs ( eg Ibuprofen). They make my stomach bleed. I hope someone can give you a positive suggestion.

I'm not enjoying Rituximab. I haven't felt at all well since my infusion on 22 Aug. I know it takes 6-8 weeks to kick in, but I didn't expect to feel worse in the meantime. I already on 22.5 MTX and 7.5 Prdnisilone. I wonder if a very low dose of the latter would help you.

I'm inclined to blame Rituximab for the extreme and almost constant sweating,everywhere but mainly my head,face , armpits and ground. I can't read a book without it dripping onto the pages. It makes me feel so anti-social. Have you had this affect fromRituximab?

Jo x

[cathie in reply to Jora]

No, but I'm in a much cooler place (meterologically speaking) than you. I'm trying to get them to give me a booster to the rituximab which hasnt produced any nasty side effects (so far) but I'd been taking an ibuprofen around 4am and it helped the inflammation. Have been told I've got to stop. So I'm trying to identify other anti-inflammatories while the medics have sent me on this merry go round around the gastro people whose mission in life seems to be to get me to have a telescope stuffed down my throat.

I hope the sweating calms down with the weather and that it does kick in. I dislike finding that something doesnt work.

How is the new knee?

[NicolaP]

I've been on Simponi and Sulpha since last September but still having to take 1 or 2 200mg Neurofen daily for a boost. I've been prescribed the Proton Pump Inhibitor Omeprazole since I was originally diagnosed in 2010 because of stomach problems in the past, but my bloods aren't showing a problem with the liver. The PPI can actually cause anaemia as it reduces absorption of iron and B12. I'm iron anaemic and have been for some time but am also having problems with B12. They are aware I'm taking ibuprofen but haven't told me I have to stop. Instead the GP surgery has prescribed ferrous sulphate tablets for the iron but not done much about the B12 (that's another story). I've had to pro-actively take a B12 sublingual spray to try and improve it. Have they not suggested a PPI at all plus treatment for whichever anaemia you have? I've been borderline iron anaemic for years, hence the PPI to protect the stomach when I was originally given Naproxin waiting for a diagnosis, and have continued with them. I can't actually tolerate "powder" tablets (such as Paracetamol) without the PPI because I get chronic acid indigestion and even with it I get issues. I've always suffered from migraines so have a history of taking pain killers etc, hence the issues, but have found that Neurofen Liquid Capsules, which admittedly are more expensive than tablets, are not so harsh on the stomach. The iron anaemia I just have to work on, can't not taken Nurofen or I really suffer. Its getting to the stage when I think the Biologic may have to be changed but Rheumy is reluctant as, in spite of the blood results, things have improved.

[cathie]

No I can ask. This is helpful. I think the iron is making me feel more positive. Woman of iron!

[earthwitch in reply to cathie]

If iron levels are a problem, it may be worth asking your GP to screen you for coeliac disease just to make sure that it isn't a malabsorption problem causing the anaemia.

[cathie in reply to earthwitch]

I think they've done that or are going to. But good point.

[earthwitch]

Low dose naltrexone? not specifically an anti-inflammatory, but does seem to have an effect modifying autoimmune responses, and definitely modifies pain responses significantly. it is an off-label use, and some NHS regions won't allow it to be prescribed (or will only prescribe it for MS), but I managed to get it on the basis that I had run out of other options and it has virtually no side effects. I did do some homework and presented my GP with a summary of it. Only real issue is that you can't take it with opiate pain meds (it is an opiate antagonist), so no more codeine, etc.

[cathie in reply to earthwitch]

Thanks. I don't take codeine any more. This is helpful!

[earthwitch in reply to cathie]

I'm not eligible for biologics, and had run out of options with NSAIDs, plus had a hypersensitivity reaction to SSZ. My rheumatologist gave up at that point and wouldn't try MTX, so it left me with nothing. I've actually had about as much relief (from my AS) from low dose naltrexone, and most of the time get by with no pain relief or just paracetamol. Periodically when I flare I do need a short steroid boost, but LDN definitely has made a huge difference to me. Its not my med of choice (I'd just about kill for the chance to try biologics), but it is definitely worth taking and has kept me able to work, albeit part time.

[cathie in reply to earthwitch]

What's ldn?

[Fennella02 in reply to earthwitch]

Hi earthwitch. Just wondering why you're not eligible for biologics? I thought that they were the treatment of choice for AS? I can't take NSAIDs either and, despite my SL.E/UCTD dx, I have a suspicion about AS.

[Moomin8]

Hi- I've found that the more inflamed I am the worse my iron and hb count. I take ferrous fumarate 3 times a day also.

I had an endoscopy to check what was going on (my GP initiated it) It revealed I had a hiatus hernia and now take omeprazole twice a day which seems to help the pains in my chest at the end of the day.

However , as I'm aware that my b12 can deplete because of the ppi, I take b12 in tablet form to maintain my b12 count.

I didn't get on with any nsaids to be honest - neither codeine or tramadol which I've also tried over the months. So for me, as a painkiller, I can only take paracetamol.

[cathie]

Thanks. They want me to have an endoscopy, how was yours Moomin8? I've had two days of ferrous thingy and feel v energetic. Just one pill to start.

[AgedCrone in reply to cathie]

I'm butting in here, but I just had an endoscopy & I was VERY apprehensive having had one years ago that was horrid.

But in 2016 things have changed.....I went in as a day patient ....they gave me a sedative...turned me in my side & when I woke up it was all over....so please don't worry.

I had no sore throat & felt well enough to eat my normal evening meal!

Go for it Cathie....it might just solve your problem!

Good Luck whatever you decide.

[Moomin8 in reply to cathie]

I'm pleased to hear that you have more energy already! My endoscopy was ok- chose to have a sedation even though I wasn't offered it at first. However, because they didn't weigh me (is my theory for mistake) I didn't have enough sedation so they may as well have not bothered for all the good it did! It wasn't too awful though- just uncomfortable and it was over before I knew it. It did reveal a hiatus hernia but nothing more. It's worth having it done, in my opinion, even though my rheumatologist thought it a waste of time - my gp's suggestion, not hers.

[cathie]

Thanks. I'll see this clinic at beginning of October so will see then. You're very reassuring

[Fennella02 in reply to cathie]

I've chickened out of them for years. My HB is always in my boots (69 currently) but I think it's caused by chronic disease so I continue to resist. I wish I had the strength to go through with it . .

[Chanel47]

Hi Cathie

I am on Rituximab, had first 2 infusions last December. I had to stop MTX and Cimzia because of liver damage. My rheumy advised that his preference dual therapy with Rituximab is MTX but as I can't tolerate it I am on Sulphazalazine. This combination is working really well for me, I am the best I have been for a long time and so far my liver is ok! I was advised when I first began Rituximab that the infusions would be 6 monthly if needed that soon. Now this has changed to no sooner than a year apart, (new budget rules I expect). Thankfully after seeing rheumy this week I won't be needing another until at least December as doing so well! I am taking much less cocodamol than I was also. Have you tried Sulpha before? I really had begun to think I was never going to find any thing that worked well. I hope you get sorted out soon.

[cathie]

I'm glad to hear you're doing so well. I did try sulphazalazine before I went on biologics but this was a long time ago and I can't remember anything more than that sulpha didn't do much. It is on the agenda to combine with ritiximab. I might have notes from ten years ago!

[Hidden]

cathie, might your anaemia be an anaemia of chronic disease? Just throwing this in 'cos I thought that wasn't / shouldn't be treated with iron tablets? (Though I may well be wrong).

[cathie in reply to Hidden]

I don't know about this but will look it up thanks